3rd opinion ??????

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jessie123
jessie123 Member Posts: 532
edited January 2019 in Just Diagnosed

So many decisions - need yours

First hospital diagnosis --- Lobular / Second hospital (different hospital) diagnosis - mammy carcinoma - lobular like. Those are two different types of cancer -- the second is a mixed cell type of IDC and ILC. A second opinion is recommended, but what about a third opinion when the first and second differ. Would you go for the 3rd opinion? If I do it more time will pass before I receive treatment, but my Ki-67 was low.



Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    How are they classifying the cancers? My pathology uses e-cadherin testing to determine idc vs ilc.

  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited January 2019

    The biggest question is - will treatment be different, and my guess it wouldn't. I had "mammary carcinoma with lobular features" and was obsessed with the fact that not only I got cancer, I also managed to get "not a normal" one. Pathologists (2 opinions) comments were that cell arrangements resemble IDC, but e-cadherin was negative. This was on both core biopsy sample and after surgery (whatever was left after chemo destroyed 90%+ of cells).

    My oncologist told me the treatment was the same - based on my age (40) and MammaPrint (high risk) - pretty aggressive. I had neoadjuvant chemo with good, but not complete, response, BMX and oophorectomy and AI.

    There is some evidence that ILC responds better to AIs, but if you are postmenopausal, you will be offered AIs regardless.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    Yes, me too, the treatment is the same I had 2 tumors one ilc and one idc.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Meow -- that I don't know. Will receive the 2nd report in writing on Friday.

    Far Away --- yep, I feel the same Why did we have to get a cancer that represents only 3 to 5 percent of all breast cancers? Did you have to have Chemo because of your Ki-67 score or was it the MammaPrint? When do they do the MammaPrint -- I thought that was after surgery. I really don't want chemo. Did your ovary have anything to do with your breast cancer. I have cysts in my ovaries -- is that relevant? I've been told that they treat this cancer as IDC. I used to want a BMX when I thought I had lobular, but when the diagnosis changed I decided on a lumpectomy. Do you know if this cancer has a tendency to be in both breast like Lobular does? Although the treatment is the same the characteristics of the cancer spread will determine my choices. That is why I want to be sure --- why have a double MX when I may be able to have the lumpectomy. To make you feel better (as it did me) this cancer is supposed to have a better prognosis than Lobular or IDC. Of course, they know very little about it since it is so rare

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Meow --- this isn't two tumors -- it's one tumor with IDC and Lobular characteristics or cells. It's like a baby born from an IDC mom and an ILC dad --- genes from both. (-: It's rare and treatment is guess work in my opinion.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    My idc also had lobular characteristics. Until I had a mastectomy my surgeon thought it was multi focal, Turned out to distinctly separate but multicentric. It was the E-cadherin test that changed 2 ILC tumors to IDC-L and ILC.

    My oncodx was 34, grade 1 & 2 er was 95% and pr-, her2-. I said no to chemo and did AI drugs for 4 years. What treatments have been offered to you?

  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited January 2019

    Jessie, my KI 67 was very high (40%). I had my biopsy and initial diagnosis at my community hospital, and went to a major teaching hospital (and NCI designated cancer center) to see an oncologist based on my friend's recommendation. Said friend also had BC at 40. BC in young women is a more agressive disease, and my oncologist specializes in young women with breast cancer.

    She told me I would likely need chemo based on the ki67 and grade (2 or 3), and offered me to enroll in a clinical trial that involved neoadjuvant chemo (chemo before surgery). I jumped on that opportunity, because experimental drug (which I didn't get, because I landed in the control arm) had good results. Anyway, before enrolling someone with ER+/Her2- cancer the trial required mammaprint, so I had it on the biopsy material. It came back High risk confirming what my oncologist have thought. I had chemo, and was lucky to have a very good response for someone hormone positive, HER2 negative. This type doesn't always respond to chemo, so I liked the idea of having it before surgery so that we could monitor response.

    Chemo is no picnic, but at 40 I just wanted all they had in their arsenal.

    My ovary was fine, but as a more aggressive hormonal treatment I was offered aromatase inhibitors. They only work on postmenopausal women, or those who are put in menopause chemically or surgically. I was on shot that was suppressing my ovarian function for several months after chemo and surgery, but then elected to have them removed.


    As to my decision to have BMX, it was due to the fact that DCIS (non invasive cancer) was found in my other breast when my second hospital did an MRI. I think I commented on your post about the MRI. I suggest you do it if you consider the lumpectomy.

    I don't know if the fact that I had cancer in both breasts was due to specific histological type: my left breast was non invasive and low grade. As per my oncologist, it could have become invasive 5 or 10 years later. I was, at the time, very upset with all this news: breast cancer, somewhat atypical cancer, cancer in another breast...

    I now concentrate on the fact that I had good treatment, and am doing everything in my power to keep the cancer away.

    I wish you peace in your decisions.


  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    farawaytoo, I was offered the same chemo but declined. I was 53 and postmenopausal so I started with anastrozole then later exemestane both effective for my er+ pr- cancers. I did an mx, my 2 tumors were each 1cm.

    No ki-67 was ever reported for me grade 1 & 2 tumors, both mitotic score of 1.

  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited January 2019

    Meow, my mitotic score was also 1, both on core biopsy and on post surgical specimen. I admire your courage to go against doctor's recommendations. In my case, I sort of had a gut feeling I would need chemo. Even when nurse navigator at my first hospital told me I should do surgery and then decide based on Oncotype results. Since chemo melted away my 2.8 cm tumor down to tiny patches of cells, I am glad I had it. It was hell, I won't lie, and I still have waves of nausea when I think of the infusion room. I'm going for my regular follow up next week, and just the thought of having a blood draw in the cancer center makes me sad. But I don't regret my decision.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    Atleast you know the chemo was working that must be a huge comfort. My chemo recommendation was to take my 23% risk of recurrence (with tamoxifen, not AI) to maybe 12% in 10 years. I looked at the statistics and the sample size on my oncodx report and I wasn't convinced. I think being pr negative drove my score higher. As it turns out AI drugs appear to be much more effective than tamoxifen for er+ pr-. Also add in low grade, mitotic score and ilc, I felt pretty good about my decision. My oncologist said ok but you should get MRIs every year. It is 7 years now and my oncologist thinks my risk of recurrence is less than 10%.

    My tumors were smaller 1cm each.

  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited January 2019

    Based on some calculators that incorporate clinical stage before chemo and pathological stage after surgery, I'm getting 93 - 97% probability of being disease free at 5 years. I take this with a grain of salt, because statistics do not apply to an individual. My probability of getting BC at age 40 without family history and with my lifestyle (two pregnancies pretty early in life, breastfeeding for a total of 3 years) was under 1%, and I still got it.

    Even those with low risk can get recurrence. I didn't have an Oncotype, and MammaPrint lumps everyone with high or low risk together, but if you read MINDACT trial results carefully, low risk mammaprint patients (those who are low risk both clinically and genomically) still have 2.3% probability of having a distant recurrence at 5 years. For the same trial distant recurrence in high risk patients (both clinical and genomic high risk, like me) had 9.4% chance of distant recurrence after chemo (90.6% distant metastasis free survival).

    I don't know where I'm going with this :). Just that after studying statistics carefully, and getting discouraged when I look at survival among young women or encouraged after I look at studies of patients who had good response to neoadjuvant chemo, I try to step away from my computer and just live life. I think the most important thing is being comfortable with your decision. I had some gut wrenching ones, and I agonized for a long time before making them. But once I made them, I never looked back.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    I keep looking for answers. I think it is my problem solving mind. I want to keep my good health, my primary goal so I can continue to enjoy life.

  • Lindachow01
    Lindachow01 Member Posts: 7
    edited January 2019

    I went for 2nd opinion.

    If ur 1st and 2nd are different, I wld definitely go for a third opinion.

    Linda

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2019

    Back to your original question, if it will relieve fears that you might not be getting the best treatment for your dx, and you have time--get a third opinion. Hopefully your insurance will pay for it. Sometimes I think reassurance goes a very long way in relieving stress, which in turn relieves us from the crushing worry about our health and future when we face a dx such as this.

    BTW, I was upset when my surgeon said ILC (what I was dx with) was, his words, "RARE". Freaked me out. Then I read more and found it is the second most common type of BC, below IDC. Re-framing it like that helped me a lot.

    Claire in AZ

  • windingshores
    windingshores Member Posts: 704
    edited January 2019

    I had mixed IDC and ILC (with DCIS) and in places my e-cadherin was negative, others it was positive.

    My pathology results from biopsy were HER2+ but then equivocal and finally negative after surgery. 

    I got 4 opinions but after surgery. Keep going until you are comfortable.



  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2019

    Many preeminent institutions can do another opinion on the pathology just by having the slides sent to them. Johns Hopkins comes to mind but there are many others that do remote second (third) opinions on the pathology. My pathology was sent by my local institution to Vanderbilt for a third opinion when their pathologists came up with different opinions. Now is the time to gather as much info as you can. Since it sounds like treatment would be the same, you could move forward while waiting to know the exact result. Your breast surgeon should be able to help you with this.

    I have usedthis “Ask the Expert" site several times and it is very helpful. http://www.hopkinsbreastcenter.org/services/ask_expert/



  • Murfy
    Murfy Member Posts: 342
    edited January 2019

    As others have said, treatment will be the same. But treatment depends on tumor characteristics, ie, size, node involvement, hormone/Her2 positivity, and grade. Once these have been established you might want 2nd and 3rd opinions on treatment choices.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Well, never mind. I saw my doctor yesterday and she confirmed my diagnosis of mammary carcinoma Lobular like. However, she said that is not mixed --- it's Lobular. Her nurse told me on the phone it was mixed. Also when I type that into google the Johns Hopkins site considers that wording on a path report Mixed. It stained positive on the E-Cadherin. She has years of experience and is published on pub-med, but something just doesn't add up to me. I know the treatment will be the same, but I'm just so frustrated and worried. I know that I can send the slide off, but I do think that she will be very unhappy about that. Lucy - thanks for the link. I posted last night a question for the expert.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited January 2019

    Mine was IDC with Lobular features. One report called it mixed. My understanding is that the E-Cadherin staining is how they decide which type it is. I believe positive staining means either IDC or possibly IDC with Lobular features as in my case. You might want to speak with the pathologist to get details on the tests that were done and what the results mean.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    Yes, e-cadherin is how my cancer was determined I had one of each, ILC, no e-cadherin and IDC with lobular features highly expressive of e-cadherin.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited January 2019

    I am going to dig out my reports. Now I am very curious about exactly what they say about E-Cadherin.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    I am looking at the summary my IDC was determined because there were definite tubular formations and the E-cadherin was strongly positive. That was the mastectomy pathology.

    My biopsy said both were ILC, of course it was only a sample of the tumors, in the biopsy it says e-cadherin negative. Interesting to note the pathologist who did the mastectomy biopsy saw these results and mentions the material in this sample, from mastectomy, tumor #2 is highly positive for e-cadherin.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    Meow -- that's interesting --- so that was the mixed kind or they say it's called IDC-L and it stained for E-Cadherin. I am sure that is what I have. Why is this surgeon saying it's straight Lobular - it just doesn't make sense to me. I am so sick of thinking about my cancer, but I have no choice. If I don't know what my cancer is how do I begin to decide if I should have a lumpectomy or BMX. Thanks for your help

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    oh I see, mastectomy if lobular? I had to have mastectomy because the MRI saw 2 tumors and a suspicious area. Turned out the suspicious area was normal. Also with mastectomy it was confirmed the tumors were separate. No radiation then I had DIEP 4 months later.

  • jessie123
    jessie123 Member Posts: 532
    edited January 2019

    I'm going to have the MRI in about 10 days. I've put it off twice. That's another concern - if I have the lumpectomy I'll have to continue having the MRI with that dangerous contrast. I guess I could say no to that and insist on an ultra sound. I guess it all depends on my diagnosis. I can see now that I'm not going to be the best patient. I've never had to be an ongoing patient, but I'm learning fast.


  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    I still have the MRIs because I only had a single mastectomy the right side unaffected by cancer. Still have dense tissue too. I am just reading about that dye contrast. Sounds concerning.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    jessie, lets go golf, I found this old thread discussing e-cadherin and tubular nottingham scores

    https://community.breastcancer.org/forum/71/topics...


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